Advocacy Makes You Feel Good

I have a 61 year old patient who is the wife of a prominent local physician and has been in my practice for over thirty years.  When she first started developing strange aches and pains as well as abdominal symptoms her evaluation turned up nothing. At that point she was very active; playing ball with her two growing sons and dancing the nights away wearing out dance partner after dance partner at community social functions.

When I could not determine the cause of her ills I asked for help at reputable places including the University of Miami rheumatology division and gastroenterology division. Like so many illnesses, the disease remained a mystery until it was ready to show itself and until technology and progress developed diagnostic tools to allow us to see what is actually there.  With the help of a brilliant local gastroenterologist and rheumatologist, and after a trip to Johns Hopkins Medical Center and the Mayo Clinic, collagenous colitis and Sarcoidosis were documented.  In the interim, local medical doctors and her friends branded this poor woman as “another neurotic spouse of a doctor who liked narcotics.”

She developed a peripheral neuropathy which meant her feet and legs hurt all the time with burning / shooting discomfort exacerbated by walking. She went from dancing the lindy to hobbling with the assistance of her husband and a cane from the bedroom to her kitchen. She would then have to sit down, massage her legs and put on thick cushioned sweat socks to tolerate the foot and leg discomfort.

When her local rheumatologist had lost patience with the frustration of not being able to help her with the off-label use of drugs like gabapentin, lyrica, antidepressants, anti anxiety drugs, anti inflammatory drugs and narcotics; I recommend she be seen by the most acclaimed rheumatologist clinician in the United States.  She consented and went out to Cincinnati.

The consulting physician discussed small fiber neuropathy as the cause of her pain. Fortuitously, an article arrived from the Cleveland Clinic describing the diagnosis and treatment of this disease with intravenous immunoglobulin (IVIG).   I read the article and called the doctors in Cleveland. They were warm, encouraging and helpful. They sent additional information and references, instructed me on how to obtain and transport the skin biopsies required to confirm the diagnosis and, explained the nuances of treatment.

It took several weeks for the biopsy specimen results to confirm the diagnosis.  We decided to try the IVIG and arranged for the daily infusions for five days out of each month only to be turned down for reimbursement by Aetna Insurance Company. The medication costs about $8000 per month. I wrote two appeals for the patient and faxed them off to Aetna, only to be quickly turned down because it was considered “experimental.”

Experimental?   The Cleveland Clinic, the Mayo Clinic and the Weitzman Institute in Israel were using this drug successfully to treat small fiber neuropathy for years. The group in Cleveland had built on previous works in this area and developed an administration regimen and dosing that actually provided relief in 70-80% of cases. Nothing else worked.

Aetna was bound by law to offer another appeal.  A teleconference was scheduled.  I did my homework begging the rheumatologist in Cincinnati to assist me.  He did not.  I asked the local neurologist to help me, but “he was out of town not near a phone.”  Fortunately the care team in Cleveland, along with their lead physician, supplied me with information and data and prepped me like an attorney preps a witness before a trial.  The lead physician offered her time to participate but Aetna would not alter the time of the appeal to accommodate her. I was on my own. Her husband assisted me with preparations and joined the conference on his wife’s behalf.

When I called in to the conference line and gave my password I felt like David facing Goliath.  When I was introduced to their panel of surgeons and lay persons not familiar with the disease I felt encouraged. I decided to slay them with civility, professionalism and data. I painted a personal image of the patient’s life before her illness and now. I wanted the panel to be carrying the image of a human being in their minds and the devastation the disease was causing as they deliberated. I explained that all the conventional treatments and off-label treatments they previously approved, had not worked. I then gave them an educational teaching session from the literature, quoting articles and experts on the subject from around the world. I told them that we now had a rare disease with a treatment that actually worked; quoting soon to be published success stories from around the world – all accumulated and performed at very reputable institutions.

The physicians representing Aetna thanked me for being my patient’s advocate. They told me such participation is rare but it certainly gave them a much clearer picture of the situation and choices. They said a decision will be made within two weeks and we will be informed by mail of their decision.

I hung up the phone feeling very positive. I had taken the time to become an expert on my patient’s illness and fought for their care to the best of my ability. I called my patient and reported what had transpired and informed her that we would have about a two week waiting period for a decision to be made.  Then I sat back and picked up my yellow legal pad and drafted an outline of how I would approach the next appeal when this appeal is denied.

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